Tag Archives: DietWell app

Keeping an Off-Diet Food Diary during a PKU Kuvan Responder Trial

Off-Diet PKU Kuvan Responder Trial Food DiaryWhen BioMarin’s Kuvan was approved by the FDA in 2007 as the first prescription drug to treat phenylketonuria (PKU), directions for taking the prescription drug stipulated that a low-protein diet must also be followed. However, when I first discussed a Kuvan responder trial with my clinic in the fall of 2010, I was advised that I could remain on a non-restricted diet as long as I consume close to the same amount of protein each day. I suspect that this relaxation was granted with the understanding that if I do in fact respond to the drug, then lower phe levels are better than completely unbridled protein intake. They key; however, to making sure that you consume roughly the same amount of protein each day means keeping a very detailed food diary.

Initially, I found it tricky to figure out a good method for capturing my daily protein intake. I explored the possibility of using Cambrooke’s DietWell app—a fabulous tool for the PKU community—but the more I experimented with it, the more I realized that the items that are truly high in protein are absent from its database.

So now that I’m nearly a week into my Kuvan responder trial, just how have I managed to keep track of my protein consumption? Well, here are the three “secrets” to my success:

  1. Take advantage of publicly available information—Obviously, checking a food product’s nutrition label is a great place to start when keeping a food diary. Be sure that the first thing you look at is the serving size because many products you buy in the grocery store will contain multiple servings per container. Use a weighted food scale, measuring cups or measuring spoons to gauge you portions. For times when not eating at home, try to plan ahead. Many restaurants list nutritional information on their Websites, have apps you can download to your mobile device or sometimes you can even ask your server for a printed brochure of nutritional information.
  2. Men’s Health—Whether it’s the New York Times Bestselling “Abs Diet” or the popular “Eat this, Not that” series, Men’s Health does an excellent job of providing all the information you ever possibly want on a food item. I especially like their recipes where we can cook healthy, in the comfort of our own home, and know exactly how much protein there is in a serving size. I’m sure other recipes, whether in a magazine or posted on a popular cooking website, will provide the same type of useful information. The Men’s Health product line has worked very well for me though.iPhone notepad app screen shot Kuvan Responder Trial PKU
  3. iPhone Notepad App—Lastly, because I am getting my protein equivalent information from a variety of sources, I decided to use my iPhone’s notepad application to track my meals. Even though this notepad app came standard on my iPhone, it has the mobile convenience of the DietWell app, but the flexibility of a blank page. I’m able to enter whatever food product I ate, total the daily protein amount, and when I’m done, forward the finished document directly to my email.




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